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My first CPAP titration study
#1
I am heading into my first CPAP titration study and wanted to get some tips.

Background: I have been diagnosed with severe obstructive sleep apnea (via a tech study). My OSA and Central SAs seem to be close (index 6 and 4.5 respectively) . My AHI and RDI are also high (60s). So I know we need to treat - whether I have OSA or Central is not clear but everyone is focusing only on the OSA and I doubt I can get further anaylsis (for now).

When I go into the CPAP study I'd like to take advantage of all the possible mask/machine options. Here is what I know about my sleeping habits

-I often have a stuffed nose. Nasal sprays before bed don't seem to do much
-I think I am a mouth breather (I often wake with dry gums and mouth). The tech for the first study didn't seem to think I was a big mouth breather so.....
-I tried a chin strap several times and it made my TMJ worse
-I can only sleep on my back due to bilateral shoulder injuries

Based on on this, I am thinking a nasal mask would not be an option? Also, I often get some relief when I take an Ambien but I now read that it can impact Central SA so I gather I should not use it for the CPAP study? Is there something else to use instead to get me to sleep for the study?

Anything else I should consider? My skin tears easily and I have to avoid adhesive or tape. I have small lung capacity and am a shallow breather during the day. I had pneumonia in both lungs as a child. Seriously, I have no idea what I should be considered to be important at this point ("my favorite color is blue and I *really* do like walks in the rain....")

My mother - who also has sleep apnea - says she can only use a Bipap machine but my doctor will not consider it for the titration study until I have tried the CPAP for 4 months and failed (whatever "failed" means).
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#2
(01-13-2016, 03:54 PM)MeDee Wrote: I am heading into my first CPAP titration study and wanted to get some tips.

Background: I have been diagnosed with severe obstructive sleep apnea (via a tech study). My OSA and Central SAs seem to be close (index 6 and 4.5 respectively) . My AHI and RDI are also high (60s). So I know we need to treat - whether I have OSA or Central is not clear but everyone is focusing only on the OSA and I doubt I can get further anaylsis (for now).

When I go into the CPAP study I'd like to take advantage of all the possible mask/machine options. Here is what I know about my sleeping habits

-I often have a stuffed nose. Nasal sprays before bed don't seem to do much
-I think I am a mouth breather (I often wake with dry gums and mouth). The tech for the first study didn't seem to think I was a big mouth breather so.....
-I tried a chin strap several times and it made my TMJ worse
-I can only sleep on my back due to bilateral shoulder injuries

Based on on this, I am thinking a nasal mask would not be an option? Also, I often get some relief when I take an Ambien but I now read that it can impact Central SA so I gather I should not use it for the CPAP study? Is there something else to use instead to get me to sleep for the study?

Anything else I should consider? My skin tears easily and I have to avoid adhesive or tape. I have small lung capacity and am a shallow breather during the day. I had pneumonia in both lungs as a child. Seriously, I have no idea what I should be considered to be important at this point ("my favorite color is blue and I *really* do like walks in the rain....")

My mother - who also has sleep apnea - says she can only use a Bipap machine but my doctor will not consider it for the titration study until I have tried the CPAP for 4 months and failed (whatever "failed" means).

First, start with the most minimal mask (nasal pillows). If you find those work, no need to do anything else because you will have found the most comfortable option right away. If you have mouth leaks or otherwise fail to find mask nirvana with nasal pillows, then the next thing is going to be a version of full face.

You have mild mixed apnea and the titration hopes to titrate you for CPAP (OSA) in the hope that the centrals will not be a problem, or will disappear with positive air pressure. If you have any skin in the game (money), I'd make damned sure that the titration protocol was prepared to advance to bilevel and even ASV if the CPAP titration is not successful in achieving control of the problem(s), or if CPAP actually makes the complex apnea WORSE!

We deal with patients on the forum all the time that have mixed apnea, and who's doctors say they aren't going to try bilevel until they fail CPAP. That's BS! That approach comes from insurance, not medical science, and it serves to piecemeal the titration so that multiple studies can be billed rather than one. The job of the titration study is to find CPAP pressure that provides efficacy in controlling OSA, however if that fails, the protocol should evaluate bilevel, and then ASV until the patient is successfully titrated. The approach suggested by your doctor is that they will do the best they can, limiting themselves to CPAP, and then let you go untreated (or worse) for months so the insurance clearly agrees CPAP is failed. When you are paying for a titration and clinical study, your money should pay for a complete diagnostic and titration. If CPAP works, then that's fine. Another member "hornumb2" had severe complex apnea diagnosis, followed by CPAP titration that didn't work, and ended up in an endless and costly testing circle. The studies were unaffordable and he finally just bought his own ASV http://www.apneaboard.com/forums/Thread-...ice--12232 .

Do a search for "Sleep apnea titration protocol". Both Respironics and Resmed have protocols published online that you can read. I would expect the titration plan of your doctor to resemble those recommendations, or find a sleep clinic that will not piecemeal the work to increase profit.
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#3
[quote='Sleeprider' pid='146373' dateline='1452720911']
[quote]
You have mild mixed apnea and the titration hopes to titrate you for CPAP (OSA) in the hope that the centrals will not be a problem, or will disappear with positive air pressure. If you have any skin in the game (money), I'd make damned sure that the titration protocol was prepared to advance to bilevel and even ASV if the CPAP titration is not successful in achieving control of the problem(s), or if CPAP actually makes the complex apnea WORSE!

We deal with patients on the forum all the time that have mixed apnea, and who's doctors say they aren't going to try bilevel until they fail CPAP. That's BS! That approach comes from insurance, not medical science, and it serves to piecemeal the titration so that multiple studies can be billed rather than one. The job of the titration study is to find CPAP pressure that provides efficacy in controlling OSA, however if that fails, the protocol should evaluate bilevel, and then ASV until the patient is successfully titrated. The approach suggested by your doctor is that they will do the best they can, limiting themselves to CPAP, and then let you go untreated (or worse) for months so the insurance clearly agrees CPAP is failed. When you are paying for a titration and clinical study, your money should pay for a complete diagnostic and titration. If CPAP works, then that's fine. ....

Do a search for "Sleep apnea titration protocol". Both Respironics and Resmed have protocols published online that you can read. I would expect the titration plan of your doctor to resemble those recommendations, or find a sleep clinic that will not piecemeal the work to increase profit.
[/quote]

I called the doctor's office and asked them to confirm the treatment protocols and they didn't understand what I was looking for. The sleep neurologist owns the lab so I don't know why they wouldn't have this info. I know it is not something the typical patient asks for. Eventually, I reached a nurse who explained that I don't have central apnea because I need more than 50% of the apneas to be central and/or my centrals have to be "above 5" - mine were only 4.5./hr And all the titration protocols I've seen so far seem to say the same thing: I don't have mixed or central based on the study I just had, so there is no reason to test anything else but the CPAP. So without some kind of protocol in hand to show them different, I am stuck.

I realize I didn't post the full numbers before so I may have misunderstood the report

Apneas (index, #): 12.3 (66)
Obstructive Apneas (index, #): 6.2 (33)
Mixed Apneas (index, #): 1.7 (9)
Central Apneas (index, #): 4.5 (24)
Hypopneas (index, #): 48.6 (260)
RERAs (index, #): 1.3 (7)
Apnea/Hypopnea Index (AHI): 60.9
Respiratory Disturbance Index (RDI): 62.2

and next to the central numbers: "Some central apneas were noted during the night but mainly in the setting of transitional sleep or as post arousal events"
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#4
Most of the events in your AHI is hypopnea. Obstructive and central apnea is about evenly split. There is a very good chance your problem will be resolved with CPAP. There is also a better than 15 percent chance that CPAP pressure will actually cause centrals, a condition known as complex apnea. All I'm suggesting is that a study should anticipate this possibility, particularly with AHI being predominately hypopnea with a mix of OA and CA. Read post #9 in the thread I linked above, and you will quickly see, your AHI is much less severe. But what it has in common is a large number of hypopnea with a mix of OA and CA.

So the question for the doctor's office is, What if you cannot titrate me with CPAP to clinically acceptable levels? Do you have a contingency to evaluate bilevel?
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#5
(01-13-2016, 05:53 PM)Sleeprider Wrote: Most of the events in your AHI is hypopnea. Obstructive and central apnea is about evenly split. There is a very good chance your problem will be resolved with CPAP. There is also a better than 15 percent chance that CPAP pressure will actually cause centrals, a condition known as complex apnea. All I'm suggesting is that a study should anticipate this possibility, particularly with AHI being predominately hypopnea with a mix of OA and CA. Read post #9 in the thread I linked above, and you will quickly see, your AHI is much less severe. But what it has in common is a large number of hypopnea with a mix of OA and CA.

The "apnea/hypopnea ratio" comment makes sense. One of the other things the nurse told me "hypopnea" = not full apnea. Therefore I didn't have severe apnea because most of them was hypopnea . She said there was no "central" vs "obstructive" hypopnea - that they were the same no matter the cause.

I'll mull over your suggestions to push them about a contingency. But it almost begs the question whether the will ever produce a medically accurate titration study if they cannot even contemplate the possibility of not reaching therapeutic levels. This is the only sleep study center in my area that my insurance will cover

PS. by "bilevel" are you talking BiPAP or ASV? (still learning the acronyms)

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#6
Hi MeDe,
WELCOME! to the forum.!
Hang in there for more answers to your questions and good luck to you at your sleep study.
Much success to you as you start your CPAP journey.
trish6hundred
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#7
MeDee, the chances are, that CPAP will work fine. The issues I raise really only matter if your insurance does not substantially cover the cost of titration studies. If it comes out of your pocket through deductibles and copay, you want to make the studies efficient. If not, then this is the way many sleep clinics do business. A properly designed study doesn't require separate CPAP, bilevel and asv titration.

Without hypopnea you might not even be considered (by insurance) for treatment, but with hypopnea you have "very severe" sleep apnea. No one knows how it will respond until you try PAP therapy and look at the data. Many of us never had titration studies, but instead were given auto cpap and did our own optimization. I figure if you actually pay for it, it should be worth the price of admission.
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#8
(01-13-2016, 10:19 PM)Sleeprider Wrote: MeDee, the chances are, that CPAP will work fine. The issues I raise really only matter if your insurance does not substantially cover the cost of titration studies. If it comes out of your pocket through deductibles and copay, you want to make the studies efficient. If not, then this is the way many sleep clinics do business. A properly designed study doesn't require separate CPAP, bilevel and asv titration.

Without hypopnea you might not even be considered (by insurance) for treatment, but with hypopnea you have "very severe" sleep apnea. No one knows how it will respond until you try PAP therapy and look at the data. Many of us never had titration studies, but instead were given auto cpap and did our own optimization. I figure if you actually pay for it, it should be worth the price of admission.

Just a quick update - I got a second call from the MD's office and they said that their titration includes both CPAP or bilevel as needed. They feel that the central apnea results are so mild that testing with the ASV machine is not warranted. I think this is a good start at least.

Thank you all again for your help. I expect I have a lot more learning to do.

edited: Having someone point out that when you remove the hypo numbers, I would be considered to have "mild" apnea was very helpful. I understand that hypopnea is still something that must be treated, but this gives me a better picture.

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#9
MeDee, that is great news. I was perplexed why there were suddenly so many people being evaluated for CPAP without the contingency to consider bilevel if needed. Sounds like it is a well designed study. Good luck.
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#10
A quick follow-up - I did the titration and learned that this lab will never test bipap until my pressure is "over 20". So we stuck with the CPAP and the tech seemed to be struggling to find the right settings. We tried every mask they had in the facility - both full facial and nasal. All leaked and when they did not leak the "results" were not good (according to the tech). On top of that, the full facial masks set off my TTMJ. The nasal mask seemed a bit less painful but I mouth breathe. I don't have the report yet, but the tech suggested I look for a chin strap that won't aggravate my TMJ and see if we can make the nasal mask work.

Now on to my questions
1. Chin Straps that won't aggravate TMJ. I have a wicked overbite.
2. Given how much mask testing I may have to do, I'd like a machine that will give me nightly diagnostic results so I can check how things are going (objective evidence = good). Would an CPAP like this one work: ResMed S9 AutoSet™ CPAP I like that it has the possibility of the auto-adjust although I'd like to stick with the CPAP since they seem so set on it.

Beyond that I had what I understand are typical newbie challenges - a painful and swollen stomach with nausea (air?), a chapped lips, sore tongue and throat, and chipmunk cheeks.
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