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Titration Study - Poor Results?
"I will not see a doctor until I have bought the equipmet and tested it for 1 month."

The above statement sort of stuck out for me. You should not have to "buy" equipment to test for any length of time. They may charge you rent though.
Do not commit to buying something that you are just trialing.

Also, may I suggest that you call your insurance (if your are using insurance),
and find out exactly what your coverage is. A DME or Doctor can be misinformed.

If you are paying out of pocket, start checking prices and what is available.
There is a supplier list at top of this page that can give you some ideas of cost, and I have attached a link for you to look over. It will show your some of the newer machine choices and some to avoid. Be informed, don't let your DME or Doctor stick you with a machine you are not happy with.


As far as masks go, it is such a personal choice. You just have to try a few out. Be sure to ask for a 30 day trial on masks.
Good luck,

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Your doctor has prescribed the wrong machine. You will ultimately require what's known as an adaptive servo ventilator (ASV) to control your central and complex apnea problem. Bilevel is a great comfort improvement to CPAP, and can improve respiratory volume in patients with insufficient respiration, but it won't solve your problem, as proven by your doctor's own titration study.

So rather than prescribe the $3200 ASV, he has recommended you first waste your money on an $1800 auto bilevel (don't even consider fixed bilevel). This makes no sense at all. The ASV works as an auto bilevel for treating obstructive apnea, and can be set with a minimum and maximum EPAP and a minimum pressure support, (4.0 was recommended for you). In addition, it also has a maximum pressure support that would be up to 15 cmH2O to induce breathing during central apnea events. No other machine will do this.

You should challenge your doctor's recommendation vigorously because it cannot effectively treat you. Research Bilevel ASV and be ready to ask your doctor some difficult questions as to why he would recommend something he KNOWS will not work based on his own study results! Is he really willing to compromise your effective treatment in the hopes to save the HMO some money? In the long run, you will end up failing bilevel and will necessarily be prescribed ASV. This doctor knows that up to 15% of patients with apnea may present with complex or central apnea that required a different treatment. Why is he willing to to subject you to as much as 6-months of ineffective treatment, when he already knows what you need, or should?
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I agree that our man in Perth (Deep Breathing) is, as they say, spot on!

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I'm going to answer my own questions above with what you need to know going into this. Most insurance will require a patient to fail at bilevel before they will approve ASV. This is due to the higher cost, and the fact a few patients with complex apnea actually do get "acceptable" treatment levels with bilevel.

You should know that this experiment is most likely to fail, and that you will need to harass your doctor endlessly to persuade him to approve the ASV upgrade. He already knows this, but won't tell you.
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I think where the disconnect is here - the doctor does not think I have complex apnea. he says that I have simple OSA and the central are blips (actually both the doctor and 2 sleep techs say the central = transitory, so I have 3 people saying "simple")

So...any articles I could look at that would help shift him? Or at least educate me a bit more. Because to my untrained eye, I don't see what in my study = complex.
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campaign for a loaner bilevel and give it a month. Just don't agree to buy one. If the current DME wont do that, I am certain there are ones that will. If the treatment is satisfactory on the auto bilevel, then buy one; but make certain it really is satisfactory first. The CA level in the study was a small fraction of the AHI recorded, and if it was transitional and short duration may not be something that is deleterious. the majority of recorded incidents during the titration were hypopnea, and as you were told, may have occurred while they were testing sub-optimal settings.
هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
Tongue Suck Technique for prevention of mouth breathing:
  • Place your tongue behind your front teeth on the roof of your mouth
  • let your tongue fill the space between the upper molars
  • gently suck to form a light vacuum
Practising during the day can help you to keep it at night

هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
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MeDee, I've been doing more reading about simple vs complex apnea. In an article entitled "Complex Sleep Apnea Syndrome" by a couple researchers at the Medical College of WI, a couple points stuck out. One is their mention of repeated central apnea events (>5/hour) persisting or emerging when obstructive events are extinguished with positive airway pressure "and for which there is not a clear cause for central apneas such as narcotics or systolic heart failure..."
Well, you've got the >5, That's when obstructive events are "extinguished," but your numbers show that was not achieved during titration---not even close to eliminating OSA events. This makes me wonder how your doc (and tech) can dismiss the centrals as passing events rather than the real thing. Sounds to me like the degree of your centrals isn't fully known other than that they're over 5/hour.
The article concludes with the idea that centrals in most pts. are resolved with CPAP. For those with continued centrals, they mention bi-level CPAP, ASV, permissive flow limitation and/or drugs as the best treatment.

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I just read through this thread. I also agree that you need a loaner or rental machine and that you might need an ASV machine. I also noticed that you spent the majority of your sleep study on your back (344 out of 455 minutes). Sleep techs love this position because they get lots of Obstructive events to record. You should try sleeping on your side to see if you get an improvement in your AHI. This alone could clear up many Obstructive events.

Apnea Board Member RobySue has posted a Beginners Guide to Sleepyhead Software here:  http://www.apneaboard.com/wiki/index.php...SleepyHead

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I was at the DME today picking up a machine, and had a chat with the respiratory therapist. Pretty much, this is the game that must be played because insurance won't authorize the ASV until the bilevel is proven ineffective. Nice how they call that "patient failure". Anyway, the trick is to minimize your risk exposure if there is a question whether the machine will work or not. So the idea of getting the machine on a rental basis is not bad in this case. In the event a different machine is required, a new rental period will start. People with high deductible policies are at personal financial risk to lose the rental amounts or amount of deductible and copay in a purchase. In the event you are one of the lucky people without a high deductible, you'll be fine financially, although it might take longer to get the treatment you need. Most new users are required to meet with their doctor in the first 90 days to discuss whether the machine is working or not.

Play the game, and be patient...that's why they call us patients.
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(02-23-2016, 11:52 PM)DeepBreathing Wrote: I don't know what kind of system you're operating under, but to me this does not seem at all acceptable. Technician won't talk to you; doctor won't give an appointment; doctor has ordered a machine but won't tell you what kind; doctor is ignoring the fact that you still have severe apnea even under bipap treatment; doctor is ignoring the fact that your central apnea is probably bad enough to warrant an ASV machine. I think you're being fobbed off: I assume you have some kind of rights - I suggest you start demanding them.
Just a quick update. I contacted the doctor again and asked for a full copy of the sleep study. First I was told I already had the full copy. I then researched to find the name of the full report (scored) and asked again. Was told they don't hand those out but if I insisted I could drive to their lab and get it in person.I am willing to do this so we can move forward. I decided to push again for the precscription and also pointed out that I have all specialists send copies of all results and prescriptions to my primary care MD for continuity of care. My primary care doctor follows their recommendations but she likes to review everything since I have other ongoing complex medical issues.

Needless to say we are not finding it easy to work with this medical practice group. They were in network which is the only reason we chose them.
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