Just got the numbers; need advice

newguy · Post by **newguy** » Mon Mar 20, 2006 4:12 pm

I would appreciate help figuring out machines, masks etc.

My sleep study showed 12 centrals, 11 obstructives and 3 hypopneas per hour for AHI = 26, so moderate. I have Cheyne-Stokes respirations and oxygen saturation between 89-93% under room air. Sleep efficiency was 86%, but lots of awakenings (78) and EEG arousals (15), with sleep time 15% in stage 1, 67% in stage 2, nothing in 3 and 4, and 18% in REM.

The titration showed that 4 cm was enough to bring the total RDI to 1.2 and arousal index to 9.5, and it seems the centrals and obstructives are minimal. Higher cm led to higher RDI (e.g., 5 cm is RDI 7.2) and more arousals (12.3 at 5 cm).

So, my prescription says "CPAP at 4 cm H2O pressure, heated and humidified"

From what I've read on the forum, I'm pretty lucky I think with this light pressure seeming to take care of the problems. I don't have a lot of the symptoms you all face, mostly just some headaches and a little fogginess during the day.

So, a few questions:
1. With this relatively low pressure, is it worth pushing for an auto machine, or is just straight CPAP likely to be fine?
2. I was leaning toward a Respironics machine, but noise is a concern. I understand that the Resmed is quiet; are the Respironics noisier? I've heard that the PB machines are a bit noisy. Do I have these in the right order regarding their noisiness? Well, and how much noise comes from the machine running as opposed to the airflow through the mask?
3. The titration test was done with a Nasal Aire, but I'm leaning toward the Aura, having read all the positive comments about it. I have a mustache, and it seems that the Aura can handle that. Is that right? Is this a good choice for someone starting out? And, is this a quiet mask? I thought the Nasal Aire made a lot of noise, but that mask is my only experience.

Thanks for any advice you can give!

rested gal · Post by **rested gal** » Mon Mar 20, 2006 8:24 pm

Hi newguy,

If I had Cheyne-Stokes respirations, I'd be pushing to get at least a trial on one very specific machine...ResMed's machine designed to address the C-S breathing pattern:

ResMed AutoSet CS 2™

Regarding masks, I found the Nasal Aire II to be very noisy. It was also not very comfortable for me. Yes, the Aura (Headrest by Aeiomed) should be fine for mustachioed gents.

Good luck!

newguy · Post by **newguy** » Mon Mar 20, 2006 10:32 pm

Rested gal...thanks very much for the lead on the ResMed Autoset CS 2. That looks like it targets my particular problem, and I didn't know about it. But, it says it's only undergoing clinical trials here in the U.S. Do you know anyone who has tried one?

Fortunately, I don't have congestive heart failure; my CSR is apparently more likely an inheritance from my mom, who also had it.

Thanks for words on Aura...

newguy · Post by **newguy** » Mon Mar 20, 2006 10:49 pm

Rested gal...I found this old message on the ResMed Autoset CS 2. Do you know of others who have better experience with it?

THIS IS FROM "DONEDONEDONE" ON MARCH 7:

I wouldn't be in a hurry to buy Resmed's Autoset CS2 if I were you. I bought one in 2004 and it hasn't helped with my CSA at all.

Firstly, the unit used to go nuts with errors & beeping every few nights for the first year - until they released a bug-fix firmware revision. So that took them at least a year to come up with. My MP3 player, laptop, etc, seem to get patches released within a few weeks of problems being reported & they cost a fraction of this unit.

As far as it "auto adjusting" to your breathing rate - that just doesn't work. It will fight with you to force air into your lungs at the rate it chooses. This is non-adjustable. In the end, you either give-in & breath as fast as it decides or you take the damn thing off. If you can fall asleep with this happening, then I envy you.

Lastly, despite the enormous cost of the unit, they have not bothered to give it any delay function. So as soon as you put it on, you're 100% on a ventilator.

Worst of all, their customer support is pathetic - especially considering the cost. Once they have your $$$, they don't want to know about the problems.

Good luck....!

rested gal · Post by **rested gal** » Mon Mar 20, 2006 11:17 pm

I have no idea how that machine feels or what kind of support ResMed has for it.

You might want to send a PM to sleepydave on the apneasupport.org message board. He is the manager of a sleep lab and I'm pretty sure they are getting a CS2 soon (if not already) to try out. He's very knowledgable - he could look at your sleep study report and would be able to let you know if he thought you'd benefit at all from that kind of machine. The machine you already have might be as suitable for you as anything.

Having tried two of ResMed's bi-level machines (VPAP III and VPAP III ST) I know it can take a good amount of tweaking to get the ResMed bi-level adjusted so the machine is in sync with you. The ResMed bi-levels were a little trickier for me to get in sych with my breathing than, say, the Respironics bi-level BiPAP machine I also tried.

May be that the CS2 had some adjustments about it that the poster and/or his DME didn't get set right. Or, of course, maybe such adjustments aren't available on the CS2. Dunno.

Snoredog · Post by **Snoredog** » Mon Mar 20, 2006 11:35 pm

I agree with RG, not to make light of your diagnosis, but I think your titration study may be somehow skewed either due to an inexperienced lab tech, faulty equipment or other reason in order to come up with that low a pressure. Maybe its right, but I'd certainly question it.

The reason is your prescribed pressure is the minimum pressure that these machines deliver (usually 4cm to 20cm or 4cm to 30cm on a bi-pap), you don't even have to have OSA to find 4cm pressure is too low for most people to breathe with (i.e. where is this lab coming from?? and experienced lab would know this).

Often newbies make the mistake leaving their machine set at that low pressure find they have difficulty breathing just normally. I could be wrong here, but I'd be questioning that diagnosis if I were you (you are entitled to a 2nd opinion).

If I got that diagnosis, I would want to see the lab titration table study showing starting pressure (usually that is 5cm in a lab, your below that), so if I am reading your post correctly, they seen central apnea at that pressure >4cm and lowered you beyond the normal lab starting pressure? In any case this titration study would/should show you trial pressures used and corresponding events seen at the given pressure. In your case you want to see what happened with increased pressure (above 4cm) and it should show increased CA (Central Apnea) or MA (mixed Apnea). The least number of events would be seen at the 4cm OR cpap is not the correct therapy for you.

Then there is this theory your numbers showed an improvement at that pressure possibly because you were actually rebreathing your own exhaled air containing carbon dioxide and the delivery pressure wasn't doing much of anything. The brain would sense this high CO2 concentration and force you to breathe (numbers get better as a result). They could titrate you using only the mask (no machine) to accomplish the same thing. I wonder what your score would have showed then?

I would also be leary of any lab that uses RDI scoring as opposed to AHI scoring as its diagnosing/determining measurement. There is/was a study underway by Harvard University on this very topic on controlling central apnea (CSB) by adjusting CO2 washout rates. RG might know more about it, but as I understood it and as the theory goes, it seems when the brain senses too much CO2 washout (like you have present in the case with cpap) it stops you from breathing (i.e. Cheyene-Stokes breathing) and SDB events seen worsen, then by the same theory, if the exhaust ports on the mask are "partially" blocked where you actually rebreath more of your own exhaled air (which contains higher levels of CO2) the events seen can go down.

Back to your machine question, if you truly have Cheyene-Stokes breathing, you probably cannot use just any cpap, the machine may have to be one used for Cheyene-Stokes breathing which if not mistaken is a bi-pap machine like a Syncrony S/T where the machine has the S/T feature which helps you to breathe or triggers a breath should you stop breathing.

In any case, it will take an experienced sleep doc to determine what machine works best for you and back to why you should be titrated with the actual machine you'll be using as RG suggested.

This should not be a problem since most Sleep labs are equipped or use a Respironics Syncrony machine for titration purposes but I'm not sure if they are of the S/T type or not. I'd ask some questions and if you get a lot of non answers or "we don't knows" then I'd seek that 2nd opinion and/or retitration with a more experienced lab tech. Turnover rates in sleep labs appear high so the chances of getting an inexperienced tech are high. If you ask and they fire back we had our most experienced tech, then some doctor will look twice at your proposed therapy.

newguy · Post by **newguy** » Tue Mar 21, 2006 1:44 pm

Snoredog...thanks for your detailed response. This is quite a help to me. I did get the titration table. Here it is...can you tell anything from this about whether there were mistakes made?

Time Apnea
cm H2O (min.) C/O/M Hypop. RDI Arousal Index
0 0.21 0/0/0 0 - -
4 124.34 1/1/0 0 1.2 9.5
5 62.28 3,2/1 1 7.2 12.3
6 85.45 1/2/0 2 4.7 34.8
7 120.12 15/13/0 2 17.9 32.2
8 42.60 9/0/0 0 13.8 27.6

There's also columns for REM (min.), NREM (min.) and snore index (always 0.0).

So, it does look like there is increased central (C) and obstructive (O) apeneas above 4 cm.

Guest · Post by **Guest** » Tue Mar 21, 2006 1:48 pm

Oops, it doesn't keep the columns lined up as I typed them. Hope you can figure it out. Or, maybe there is a way to type things in columns?

ozij · Post by **ozij** » Wed Mar 22, 2006 7:15 am

Anonymous wrote:Oops, it doesn't keep the columns lined up as I typed them. Hope you can figure it out. Or, maybe there is a way to type things in columns?

Use dashes or asterisks intead of spaces.

O.

Saltydog · Post by **Saltydog** » Wed Mar 22, 2006 8:14 am

I can tell you that my titrated pressure was 9cm. When I used the ramp feature starting at 4cm it was very uncomfortable to breathe. Felt like I was starved for air. I now start at 7cm.

newguy · Post by **newguy** » Wed Mar 22, 2006 11:19 am

OK, good idea to use dashes, here is the titration table:

-----------------------Apnea
cm H2O----Time----C/O/M-----Hypopnea-----RDI-----Arousal Index
---0---------0.21----0/0/0----------0-------------------------------
---4------124.34----1/1/0-----------0----------1.2----------9.5
---5--------62.28----3/2/1----------1-----------7.2--------12.3
---6--------85.45----1/2/0----------2-----------4.7--------34.8
---7-------120.12--15/13/0---------2----------17.9--------32.2
---8--------42.60----9/0/0----------0----------13.8--------27.6

Times are in minutes
C/O/M stands for central, obstructive, and mixed apneas.

So the prescription says "4 cm CPAP"

I haven't yet gone to a DME with this, because of the concerns you all have raised. I may call my PCP back shortly and explain the concerns and see what he says. It seems there is agreement that 4 cm pressure may leave me gasping for air.

Also, I have a diagnosis of "Cheynes-Stokes Respiration" and am still looking into that, given the suggestion that I may need a special machine to address that problem.

Thanks to you all for looking at my details! This has been really helpful, but has me wondering about my sleep study and my PCP! I may take the suggestion to get a second opinion...still trying to figure out what to do.

NightHawkeye · Post by **NightHawkeye** » Wed Mar 22, 2006 11:45 am

newguy wrote:I haven't yet gone to a DME with this, because of the concerns you all have raised. I may call my PCP back shortly and explain the concerns and see what he says. It seems there is agreement that 4 cm pressure may leave me gasping for air.

DING! DING! DING! . . .

I don't agree. Actually, I enjoy 4 cm pressure. You probably will, too, newguy. Here's why; at that low pressure you get more CO2 than normal (from rebreathing). Most folks don't like it. It's different for folks with central and mixed apneas, which you have. In fact, increasing CO2 is the best way they have currently have for controlling it. You can look this up on the internet by doing a search under CSDB, or Complex Sleep Disordered Breathing. That is no doubt why your titration at 4 cm eliminated your central apneas. Simple, yes?

Hope this helps put your mind at ease with your titration. I know a lot of questions have been raised. Personally, it looks to me like your titration was effective. I recommend you give it a try before making further adjustments. Your sleep lab's estimate of what you need is likely a good starting point.

Regards,
Bill

rested gal · Post by **rested gal** » Wed Mar 22, 2006 11:59 am

newguy wrote:I may take the suggestion to get a second opinion...still trying to figure out what to do.

The first second opinion I'd seek, if it were me, would be that of sleepydave over at sleepapnea.org. Go to the Sleep Studies forum of that board and read the posts by sleepydave helping people figure out what was going on in their sleep studies. You'll see why I'd want his take and would value his opinion on how your sleep study/titration went. He knows this stuff backwards and forwards.

Here's ya a clicker to get to the Sleep Studies forum fast:

http://www.apneasupport.org/forum-4.html

NightHawkeye · Post by **NightHawkeye** » Wed Mar 22, 2006 12:29 pm

rested gal wrote:The first second opinion I'd seek, if it were me, would be that of sleepydave over at sleepapnea.org. Go to the Sleep Studies forum of that board and read the posts by sleepydave helping people figure out what was going on in their sleep studies.

I'll second that recommendation. Sleepy Dave also has posted extensively on CSDB.

Regards,
Bill

ozij · Post by **ozij** » Wed Mar 22, 2006 12:36 pm

Ok, here's where I chime in about that "most people can't tolerate 4 etc."

Most is not everyone. Some people do need and appareciate lower pressures. When I started CPAP, 4 was fine, 5 was "more" and 6 to 7 was "uh oh, is this going to get worse?"

My lowest pressure is now higher than 4 - but that's because a higher pressure seems to control my hypopneas better, not because 4 bothered me when I was awake.

Nighthawkeye and Rested Gal make a lot of sense!
O.