Completely confused newbie...

[thasatelliteguy]

Hi all! I am looking forward to becoming a regular on this forum! Looks like so many helpful people...

I am 35 and have had EXTREME apnea all my life. I had a sleep study done at about age 23, which resulted in surgery. PPP, uvula, adnoids, tonsils, septum. The Dr said "It's not gonna work, but you have it so bad, I'm gonna do it anyway. Most of it will return when the scar tissue heals, but maybe I can gain you SOMETHING." The sleep study tech said I stopped breathing 68/min. and O2 drops to 68%. The surgery gave me the best year of my life, but alas, it returned as the Dr said. (As a side note, I'd do it 1000 times over just because I've never had a sore throat again! I still get them, but no scratchy scratchy. More like a dull bruise, which doesn't bother me.)

About a year ago, I acquired a CPAP from a friend whose insurance company sent him a new one after setting his first one too high. (Funny enough, this is a long time friend who I met as my supervisor at my first real job at 18 in a manufacturing plant. He was on a personal crusade at one point to see me fired for falling asleep on the job. Life IS great ain't it!) I also got a oximeter from ebay that records. My O2 drops to 51% asleep. I got the machine up to 17 before seeing any results in O2, and even that was abismal. Staticky in the 70's at best. I couldn't stand the setting any higher. I basically gave up.

Two weeks ago, I had a nasal staph infection move into my lungs as pneumonia and spent a week in the hospital. During which time, I discovered BiPAP. Wonderful device! I immediately went on the hunt in back alleys and strip clubs for the blackmarket item, and was lucky enough to acquire a brand new Respironics System One for $375 at a Waffle House. (I find it ludicrous that these are RX only, and someone should be kicked in the jewels repeatedly for it) It was about an hour's drive to meet the guy @10pm. So I took an inverter and my mask, and I slept at Walmart for 5 hrs on the new machine, b4 driving back home in the morning. I had no idea it kept track of so much info! Discovered SleepyHead... I dl the data for the truck sleep (machine @ 16/4) and found a AHI of 23. That night, I slept on the couch all hooked up and set the machine @ 17/6. From 10p-1a, AHI 44. Added pillow under my shoulders. 2a-5a, AHI 66. Moved to the recliner(cuz that was more like hospital position and truck), setup to 16/4 again and went back to sleep 10a-1p, AHI 68. Inquired from mom about what the machine at the hospital was set at... 20/10. So that night, recliner, 20/10, and WOW! slept all night... 9hrs! O2 was 98-99 all night, no bathroom breaks. BUT, AHI 78. What the hell?

I can tell I am sleeping better than I ever have since my surgery. My digestive system is actually shutting down properly, no bathroom every 2hrs. I have no idea what time it is when I wake, so my internal clock is shutting down. I associate both of these with actually achieving sleep mode. I am tired during the day, which is a vast improvement over exhausted and unconscious. Tired is AWESOME for me! So what gives? I see people on here talking about AHI 1 and 2. 78?? How can that be? How can I possibly feel great at 78? And how the heck do I get it down?

[zoocrewphoto]

Welcome to the group.

Can you post the data from one of your nights? It will help to see the percentage of events being obstructive and central. And if there are clusters or certain time periods that are worse. It sounds like you are sleeping much better and feeling better. So that typically means a better ahi as well.

Are you looking at the on screen data or the computer software data? Is it possible that you are getting the 7 night average or the leak number? It seems odd that your oxygen would be so high with such a high ahi at the same time.

[thasatelliteguy]

How do I do that? Is there an 'attach' somewhere? I have a jpg screenshot...

[thasatelliteguy]

CAA - 249 events
Hypo 21 events
OA - 207 events
Pressure Pulse - 679 events
Snore - 40 events
AHI 74
6.24 hrs

Hypo 3.28
Obstructive 32.30
Clear Airway 38.85

[Pugsy]

How to post an image of your detailed report talked about here.
viewtopic.php?f=1&t=81072&p=737779#p737779

I think you need to make some changes in the settings but lets see the report first. Too many Clear Airway events and too many obstructive events.

[Pugsy]

Oh, I forgot...look on the bottom of the machine and tell us the 3 digit model number that you see. It's on a little sticker on the blower unit. May have DS or REF in front of the 3 numbers.
Are you using a humidifier?

[thasatelliteguy]

[thasatelliteguy]

Model IP22? Yes humidifier.

[Pugsy]

Model IP22?

No... a 3 digit number...650/660 or 750/760 or 950/960
Or what does SleepyHead say you are using?
Also what mask you are using?
Let's add your equipment to your profile once we get it figured out.
wiki/index.php/Registering_Equipment_in_User_Profile

[thasatelliteguy]

660P

[Pugsy]

Which mask please?
Your total leak number is higher than I would like to see...do you remember feeling any leaks?
It's a lot higher than I would want to see...so you need to work on leak management.

In the drop down menu for equipment...this would be your machine selection
PR System One 60 Series Bipap Pro ...
Humidifier choice in the equipment menu would be
PR System One 60 Series heated tube humidifier

Does the hose have a black end on it connecting to the humidifier? If so then you have the heated hose option already.

I am concerned about the Clear Airway events...don't know if they are real and a by product of the pressures or the OAs causing mini arousals or real due to the big difference between inhale and exhale pressure support simply causing breathing instability.

Your EPAP of 10...that is what we look at when dealing with the OAs...so the EPAP needs to be increased to better prevent the OAs (obstructive apneas)...
I would suggest EPAP 12cm tonight...and reduce your IPAP down to 16...then let's see what happens with your report in the AM.
I am hoping that you get lucky and if we can reduce the OAs that the CAs will reduce along with them.
We don't treat CAs with pressure with this type of machine.

So what I would like to see is the OAs reduce and it will take more EPAP to do that (don't know if 12 is enough but gotta start somewhere) and once they are reduced..then if the CAs are still too numerous then we have a different discussion about how to deal with them but let's cross that bridge only if we need to.

[Julie]

Also, any chance you're a mouth breather once asleep? Not unlikely at those numbers and if you lose all the therapy air out of your mouth - it can make a big difference - you might look at a full face mask (just covers your mouth as well as your nose) so the air will go where it belongs.

[robysue]

thasatelliteguy

Pugsy writes:

Which mask please?
Your total leak number is higher than I would like to see...do you remember feeling any leaks?
It's a lot higher than I would want to see...so you need to work on leak management.

I agree totally with Pugsy here. Your Total leaks are up around 90 L/min and that's close to OR in LARGE LEAK territory for the System One Series 60 machines. Moreover, SleepyHead is estimating that your excess leaks are around 60 L/min, which is totally unacceptable.

It would be interesting to see what this leak data looks like in Encore Basic. Encore Basic will flag the LARGE LEAKS, whereas SleepyHead does not. PM pugsy if you'd like to download Encore Basic to look at the leaks in it.

In the meantime, can you look at the machine's LCD and tell us the that Large Leak % number is? The Large Leak % number tells us the percentage of time you were in LARGE LEAK territory. If the Large Leak % is something like 75%, that means that for 75% of the time the machine was running, the leaks were LARGE enough to affect the efficacy of your therapy and the accuracy of the data.

My guess is that you are spending almost the entire night in LARGE LEAK territory. And because of the large leaks the machine is having a very tough time maintaining the desired pressure. And because the machine is struggling to maintain the pressure, a lot of OAs are sneaking through.

Side note: I wonder if there's a hole or a tear in the hose near the coupling at the machine end? Or maybe the humidifier is not properly seated to the blower unit? Or the humidifier tank is not properly seated in the humidifier unit? 'Cause that's one impressive leak that lasts all night long.

As to the large number of CAs? It could be that these are just more OAs that are being mis-scored by the machine because the leak rate is so high that the accuracy of the data is being affected. And once the leaks are under control, the number of CAs will drop to an acceptable number.

But there's also real chance here that you're dealing with central sleep apnea or complex sleep apnea in addition to ordinary OSA. And in that case, sad as it is, you may need to be under the care of a sleep doc instead of self-treating for OSA. If one of your problems really is central or complex sleep apnea, you may need to be switched to a more expensive machine that requires a real titration study to get a decent idea of what your starting pressures should be.

Pugsy also writes"

Your EPAP of 10...that is what we look at when dealing with the OAs...so the EPAP needs to be increased to better prevent the OAs (obstructive apneas)...
I would suggest EPAP 12cm tonight...and reduce your IPAP down to 16...then let's see what happens with your report in the AM.

Given that huge number of CAs, I'd be reluctant to increase the EPAP on the chance that there's some issues with complex apnea muddying the waters. If thasatelliteguy is in the unlucky 10% of PAPers who develop problems with complex apnea after starting PAP therapy, more pressure may make things worse rather than better.

I do think reducing the IPAP down to 16 is reasonable. It may help with the leaks. And until those leaks are under control we really don't know if the current settings are anywhere close to being enough to control the OSA while not causing problems with CompSA.

[Pugsy]

If you wish to not increase EPAP to 12 (up to you) and leave it at 10 then I would then reduce IPAP to 14.
I have seen instances confirmed in reports where PS of 6 or more seems to trigger some instability issues and more CAs in some people...reduction of the PS (pressure support which is the difference between inhale and exhale) down to 3 or 4 eliminated the CAs for the most part in some people. Not saying that is what is going on here with you but it can happen and that is why I suggested the reduction in PS to 4....be it 10/14 or 12/16.

I didn't want to cross the complex sleep apnea/central sleep bridge until....
1...leaks weren't a possible factor in unreliable data
2...it was proven that the pressure itself used for trying to fix the OSA was causing the CAs
3...the simple fix what we know obviously needs fixing first (if it can be done) and see what is left that might be a problem. In other words..try simple fix first.

Leaks are the first thing you need to try to isolate what is going on..that top leak line is total leak and way higher than it should be.
The PS of 10...could very well be a factor in leak manageability also.

[thasatelliteguy]

Ok, sorry I have been gone all day, but here are some answers to some of your questions...

1. I have a full face mask already. When my buddy gave me the original CPAP, he gave me nose pillow mask with it, but I am definitely a mouth breather, so I immediately found a medical supplier here in Houston that would sell me a mask cash.

2. I have the mask extremely tight. I do have a goatee, and it tends to seep a lil right at my chin, but I mean a LIL. I don't think this is accounting for the large leak. Especially since I had the same goatee in the hospital, and their machine wasn't screaming at me about a leak. (And it griped at me for EVERYTHING! lol)

3. Complex apnea... If by complex apnea, you mean OSA as well as Central, yes I am in that lucky 10%. Lucky me. My mom and I have already discussed that I not only have obstruction halts in breathing, but also times when I just stop breathing for no appearant reason. She cites a time when her and my aunt saw me nod off sitting in the kitchen one day and stop breathing for upwards of 30-45 seconds... long enough that they got concerned enough to rouse me. Also, when I'm in the twilight zone, sometimes I become aware that I was holding my breathe for some reason as I wake. That said, she spent 5 days with me in the hospital, and she was astounded by how smooth my breathing was on bipap @ 20/10. She indicated I seemed to be breathing nearly normal. Smooth, even, long breaths, no choppy, short or broken, uneven breathing, no snoring, no struggling, nothing.

4. Mask... I have no idea what model it is. It may be the source of the leak in and of itself. It is the CPAP mask that I originally got for the old machine. Unlike the hospital's mask, it doesn't have one hole, it has a whole patch of holes. Is this the wrong mask for this application?

5. I have the heated tube on the old cpap, but on the new one, no. It is a brand new machine, new hose, and yes it has the humidifier, and I am using it... I think. The System One option is ON in the menu.

6. I really believe that going much below 18 isn't going to be effective. I'll try it if that's the recommendation, as I WANT to SUCCEED. (I am loving my new quality of life already, and I'm at 74!) But I see your concern about the vast difference, too. Maybe raising the EPAP to get them closer? I could try 18/14 tonight and see how it works out....

Any of this help??