Complex Sleep Apnea--neeed help

jbn3boys,

My read of all the data you've posted is that you may very well have a real problem with pressure-induced centrals. And the data from the days with the higher pressure range seem to indicate the following two things:

• Centrals continue to be a problem (you knew this already). But they seem to be significantly worse with the higher max pressure. And there seems to be only minor improvement in the number of obstructive apneas with the higher pressure.
  
  The PR S1 Auto is not consistently going much above 13 cm on most nights. The night of 12/11 is the exception, but even there, it looks like you were above 13cm for only a couple of hours.

Given those observations, if I were you, I'd be extremely reluctant to increase the max pressure above my titrated pressure level---which is what? Did you have centrals during your original diagnostic sleep study? Did you have them appear (or "emerge") during the titration study having not had any in the diagnostic study? Does your sleep doctor know that with your APAP, your CAI is high enough to push the AHI over 5.0 every night?

robysue wrote:...
Given those observations, if I were you, I'd be extremely reluctant to increase the max pressure above my titrated pressure level---which is what?

My Rx is for pressure of 11. According to the summary from the sleep study, the "pressure was escalated from 5 cm of water all the way up to 11 cm of water. At the highest pressures, a few hypopneas were noted. Nasal BiPAP at a pressure of 14/11 cm of water was used in the end with no significant obstructive sleep apnea or snoring being seen."

robysue wrote: Did you have centrals during your original diagnostic sleep study? Did you have them appear (or "emerge") during the titration study having not had any in the diagnostic study?

According to the "split night report summary" chart from the sleep study, during the time without treatment, I had 13 centrals, one obstructive, one mixed apnea, and 22 hypopneas during the 164.9 minutes of sleep (AHI was 16).

If I'm understanding my treatment portion of my sleep study, during the titration, I had one central and 1 RERA at a pressure of 8, and 1 RERA at a pressure of 10, but it doesn't actually show any hypopneas. It shows no events at a pressure of 11, but then I was switched to the BiPap with pressure of 14/11.

robysue wrote:Does your sleep doctor know that with your APAP, your CAI is high enough to push the AHI over 5.0 every night?

My sleep doc? What's that! lol
Actually, my pcp prescribed my therapy, and he admitted to me last week that I probably know more about sleep apnea than he does. I've never seen a "sleep doctor", only the tech who did the sleep study. It was the tech who actually told me that I would need cpap (because I asked). She said the results would be available in a few days, and that I should schedule a follow-up with my regular doc.

jbn3boys wrote:

robysue wrote:...
Given those observations, if I were you, I'd be extremely reluctant to increase the max pressure above my titrated pressure level---which is what?

My Rx is for pressure of 11. According to the summary from the sleep study, the "pressure was escalated from 5 cm of water all the way up to 11 cm of water. At the highest pressures, a few hypopneas were noted. Nasal BiPAP at a pressure of 14/11 cm of water was used in the end with no significant obstructive sleep apnea or snoring being seen."

robysue wrote: Did you have centrals during your original diagnostic sleep study? Did you have them appear (or "emerge") during the titration study having not had any in the diagnostic study?

According to the "split night report summary" chart from the sleep study, during the time without treatment, I had 13 centrals, one obstructive, one mixed apnea, and 22 hypopneas during the 164.9 minutes of sleep (AHI was 16).

If I'm understanding my treatment portion of my sleep study, during the titration, I had one central and 1 RERA at a pressure of 8, and 1 RERA at a pressure of 10, but it doesn't actually show any hypopneas. It shows no events at a pressure of 11, but then I was switched to the BiPap with pressure of 14/11.

I'd be really reluctant to push that max pressure level to much above 11 if I were you. Any idea why the sleep tech switched you to BiPAP? You and your PCP are going to need to try to find that out. It could be that you really belong on a bipap, but will have to "fail" at CPAP/APAP before your insurance company will pay for the Bi-level machine. Certainly the continuation of large numbers of centrals at your titrated level on CPAP/APAP could be one thing that your PCP can put into a "letter of medical necessity" for prescribing a Bi-level machine in a month or two down the line.

robysue wrote:Does your sleep doctor know that with your APAP, your CAI is high enough to push the AHI over 5.0 every night?

My sleep doc? What's that! lol
Actually, my pcp prescribed my therapy, and he admitted to me last week that I probably know more about sleep apnea than he does. I've never seen a "sleep doctor", only the tech who did the sleep study. It was the tech who actually told me that I would need cpap (because I asked). She said the results would be available in a few days, and that I should schedule a follow-up with my regular doc.

This is SAD. If I hadn't been lucky enough to have a quality sleep medicine team (doctor, his PA, and my DME), I really don't think I would have lasted this long.

Since your PCP seems in over his head, you really and truly need to see a specialist in sleep medicine who is familiar with managing complex apnea. Tell your PCP that the lab he sent you to has NOT let you speak to the doctor who "read" your study---maybe that way he'll think about sending future patients to a better, more repsonsive sleep lab. And ask your PCP for a referral to a new or different sleep doctor---not just a sleep medicine lab. And when you're calling for the appointment tell the receptionist the appointment you need is NOT for a sleep study---that the sleep study has already been done and that its results will be forwarded to the doctor. Tell the receptionist you need an appointment to talk to a doctor with the appropriate expertise in managing complex sleep apnea since your current CPAP therapy is NOT CONTROLLING the complex apnea in spite of your using the machine every single night. Have the sleep lab that did your study forward ALL your records---both the dictated summary AND the raw data---to the new sleep doctor's office so that he doesn't just send you back for another study. You NEED a SPECIALIST who knows what he/she is doing here.

Until you manage to talk to a sleep doctor who has some expertise in dealing with complex apnea, both you and your PCP are trying to find a needle in a haystack in the dark as far as trying to figure out what a reasonable pressure setting on an APAP might be. And in trying to figure out whether you really need a BiPAP. And in how to document medical need for a Bi-PAP if that's the machine you really need to manage your condition.

Good luck.

Greetings jbn3boys!

Pardon the OT comment, but you can tell I spent a little bit of time in Bible study over the years, since from the very first time when I read your post, my first reading of your nickname was "Job & Three Boys!". So, here's hoping you will not need to be as long suffering.

And yes, Rooster and others were right. Your are on a path of discovery of your specific sleep problems. As your PCP noted, you've exhausted his/her knowledge. It is now time to start to see a specialist. Your PCP essentially worked through a specialist who read the report from the sleep lab. Do not blame them for not adequately dealing with the central / complex apneas. It is quite rare. Most sleep labs tend not to see many patients with central sleep apnea or complex sleep apnea.

And even when a sleep lab does not know for certain, the normal first line of action is to use CPAP. They may then shift you to BiPAP. Essentially, there are a significant number of patients who find that when they have xPAP therapy, the central / complex sleep apneas tend to correct themselves. Clearly, this does not appear to be a population that includes you.

So, at this point you have a couple options. Either you hunt for a board certified sleep specialist (either a pulmonologist or a neurologist), or you convince your PCP to request a sleep study using an ASV titration.

And for you, I have a bit of background reading for you. Why am I assigning you some homework? Well, you need to be your own advocate for your health. You want to get to the therapy that will make a difference for you. The better educated you are, the more you will be able to help advocate for yourself.

First, you want to read Rested Gal's Links to Central Apnea:
viewtopic.php?t=3025

In particular, the following articles should be helpful for you:
Complex Sleep Apnea: It Really Is a Disease
http://www.ncbi.nlm.nih.gov/pmc/article ... .5.403.pdf

Efficacy of Adaptive Servoventilation in Treatment of Complex and Central Sleep Apnea Syndromes
http://chestjournal.chestpubs.org/conte ... l.pdf+html

Here's hoping this helps.

Thank you RobySue and John for your informative posts!

JohnBFisher wrote:Pardon the OT comment, but you can tell I spent a little bit of time in Bible study over the years, since from the very first time when I read your post, my first reading of your nickname was "Job & Three Boys!". So, here's hoping you will not need to be as long suffering.

I sure do hope I will not have to suffer like Job!! My nickname actually comes from the initials of my three sons (thus the 3boys part). I am quite familiar with my Bible as well, but had never made that connection.

JohnBFisher wrote:And for you, I have a bit of background reading for you. Why am I assigning you some homework? Well, you need to be your own advocate for your health. You want to get to the therapy that will make a difference for you. The better educated you are, the more you will be able to help advocate for yourself.

And thank you for the links. I will certainly be studying them. I know I've learned so much from these boards, and I appreciate the direct links to posts that are known to be informative and accurate.

I guess I better find out just which specialist I can get in to see. Too bad I can't get it all figured out in the next 3 weeks, before new insurance deductibles begin.

jbn

I saw my pcp today for an unrelated reason. But as long as I was there, I mentioned that I was having central apneas and asked if I could get a referral. He willingly agreed. He said I most likely have mixed apnea. I assume that mixed is the same as complex?

I now have an appointment with a neurologist, but not until January 5th. I guess I'm not sure what I should do about my setting until then, but at least I know I have something to look forward to. In the mean time, I have plenty of reading to do. Let's hope my sleep-deprived brain will absorb at least some of it.