cpap and apap not effictive

[richb]

Ezil71. You might want to start your search for a new sleep doc who is familiar with treating Central Apnea and Periodic Breathing at your nearest University teaching hospital. Then ask the questions suggested by SR to be sure the Doc understands what is involved in treating the various symptoms of Central Apnea that you are suffering. So far your Doctor has done nothing for you. We are on page 10 of your saga and you are only slightly more in charge of your treatment than when you started. By that I mean that you know "I've found that for the first part of the night/non REM I can clear my events with between 7 and 7.5 cm (with flex turned off). Anything above 8 or 8.5 and the aerophasia gets bad, so I don't know where, if ever, my REM sleep would get cleared up." You also know that higher pressures cause significant aerophagia and that your sleep study showed CSA. If seeing a highly qualified sleep doc is going to be a problem you need to find a cooperating doctor or dentist who will listen to you and your data and provide a prescription. I would try to find a qualified Sleep Doc first. I had to travel an hour and a half to see my new doc. I also had to show that I failed using BiPAP and also needed face to face follow up with the new doc. If your Apnea is primarily of the Central type and it can't be controlled by machine adjustments, than you are a fairly rare patient. It took me months to find out that my original Doc did not treat Central Apnea and did not prescribe ASV machines. It was one of the Sleep Techs that told me this. Ask your current Doc if he would prescribe an ASV machine if you cannot get your Central Apnea under control and as SR suggests find out if he has other CA patients. You don't want to be the first. After 10 pages of agony it is time to take control of your treatment.

Rich

[Ezil71]

Thank you all for such great feedback, I appreciate it.

I can't say that my current doc was just waiting for cpap to fail, he basically indicated that cpap/apap wasn't going to work and pointed me towards a pillow that straps to my back to keep me on my side (or the tennis ball approach) and a few other options that wouldn't work for various reasons.

I will look into the local university/medical school and options farther away. I'm pretty sure I can get my primary doc to give me referrals.

[Sleeprider]

Do be sure to get good copies of your sleep study and names, phone numbers for the sleep center. You do not want to repeat the Dx. A competent sleep doctor knowledgeable about complex and central apnea will just move forward using that study and your CPAP data. Ask about the doctors specific expertise with CA, and their willingness to consider ASV before signing on with anyone.

Your current doc is a butt-head and should have referred you as soon as he saw the sleep study. Quite honestly he should be reported to the American Board of Sleep Medicine or the Cracker Jack box he got his paper from. Pffft, a pillow!

FYI:

Please note that the American Board of Sleep Medicine continues to maintain and verify the records of the Diplomates of the American Board of Sleep Medicine, as it is a lifetime credential. Primary verification can be obtained in the Verification of Diplomates of the ABSM section of this website or by submitting a request by email, fax (630-737-9790) or mail (2510 North Frontage Road, Darien, IL 60561) or by calling the ABSM at 630-737-9701. http://www.absm.org/default.aspx

American Board of Sleep Medicine
2510 North Frontage Road
Darien, IL 60561
Phone: (630) 737-9701
Fax: (630) 737-9790

absm@absm.org

[Ezil71]

My doctor is listed there as certified.

[richb]

It is going to take more than a label to find the right Doctor for you. Keep us posted as to your progress.

Rich

[Sleeprider]

Ezil, here is some light reading for you and the doctor. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3985095/

[robysue]

I can't say that my current doc was just waiting for cpap to fail, he basically indicated that cpap/apap wasn't going to work and pointed me towards a pillow that straps to my back to keep me on my side (or the tennis ball approach) and a few other options that wouldn't work for various reasons.

The tennis ball in the back is a trick geared towards keeping someone whose airway collapses (i.e. with obstructive sleep apnea) off the back to minimize the probability that the airway will collapse during sleep.

So the tennis ball in the back trick is not going to do diddly-squat for your central apneas. They're caused by your body's CO2 cycle getting messed up.

In short: Inhalation is triggered by the CO2 level in your blood. When it increases to just the right amount, the brain tells the lungs to "inhale NOW" and the CO2 level drops with the inhalation/exhalation of the breath. In central sleep apnea, the mechanism for triggering the inhalations goes awry. The usual problem is that a so-called CO2 undershoot/overshoot cycle sets up: At some point, you miss a breath or two and not enough CO2 is blown off in your exhalation (this is the undershoot), and that triggers the body to overreact and you essentially hyperventilate for a few breaths, which blows off too much CO2. That in turn reduces the trigger to breath and at the nadir of the undershoot part of the cycle, you wind up not breathing because there's no trigger to breathe. Which in turn then causes you to hyperventilate a bit too much and you blow off too much CO2 and the cycle repeats.

The thing that is apparent in the data you've posted is that you do get some long clusters of (mostly) central apneas scored. That, together with the fact that lots of centrals were scored on your diagnostic test, means that you seem to be experiencing long chains of central apneas that are most likely the result of CO2 undershoot/overshoot cycles.

I will look into the local university/medical school and options farther away. I'm pretty sure I can get my primary doc to give me referrals.

I think this will be the best way to get the machine you need for the therapy you need in order to get a really good, sound night's sleep.

[Ezil71]

Just wanted to provide some updates on where things stand.

I finally was able to get the Resmed S10 Autoset yesterday. Per my doctors insistence, it is set to 7-9.6 with a pressure relief of 3.

Here is a chart from last night:

https://1drv.ms/i/s!AgFs7hWqVGNflgmd5FyByuF4t6Bu

Very interesting to see that the event breakdown is nearly entirely central apneas - much more consistent with my original sleep study. I'm not sure why the dreamstation results were so different, obviously the algorithms react differently for me, especially when flex was turned on for the dreamstation.

My pressure stayed lower with the Resmed, which helped with aerophasia. Clearly the resmed sees my issue as central apneas. I'm going to keep using these for a week and then try to get back in to my sleep doc. Assuming it keeps showing centrals, hopefully he will see I need something different.

Thanks again for your help - Ed

[Sleeprider]

It's fairly common to see CA with a change in settings or new machine. Overall, the events are half what you were seeing on the other machine. Given the relatively high CA to OA, there may be room to move pressure downwards after your next appointment. Glad the aerophagia is better with this solution, and if lower pressure becomes a possiblity, then it could be even better.

Going back to some of our previous discussions, you may recall that in bilevel therapy, the EPAP is used to control OA. Given the very low OAI with the bilevel-like function of the Autoset EPR, it is likely that you will be able to reduce pressure, and that this will perhaps let the CAI also be reduced. Your idea to give it time is a good one, as we don't want to jump to conclusions on the basis of a single night.

[sonicboom]

A lower pressure suggestion such as Sleeprider's seems to be justified (albeit its just one night and I would wait for a week) since your 95% pressure was only 7.62 which is nearly a full 2 points south of the max setting by your doctor.